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Posted 11/29/2010 5:05 PM (GMT 0)
Hello all! I have been reading as much as I can, and I think that Lyme is a definite possibility for me. I have had a Lyme titer done, but only a lyme titer and it was negative. I have had some very severe symptoms for over a year and I am wondering- is there anyone here who has a very definite relapsing/remitting type course? I had an MRI done, and all was clear MS wise. My onset of symptoms was VERY sudden and VERY severe a little over a year ago. That episode cleared up after a number of months (not entirely, but for the most part), but then I had another episode in September that has all but cleared. My episodes are very, very painful and MS-like. Can anyone relate?
Posted 11/29/2010 5:17 PM (GMT 0)
Hi tinkity,

Yes, I have had relapsing/remitting MS symptoms and TWO perfectly clean brain MRIs and a clean spinal MRI! However I also have lupus symptoms and fibromyalgia symptoms and etc and etc symptoms that overlap/overlay the MS symptoms so I'm never really symptom free. Nor pain free. But I can definitely relate! sad

So sorry to hear that you're going through this! Are you planning to have a Lyme Western Blot test done? If so, please call IGeneX in Palo Alto, ask them to send you the kit (free), take it to your doctor to have him/her write the script to have the blood drawn, take it to your local lab and they will draw the blood and send it off. You will have to pay IGeneX up front (just the WB is $200, testing by PCR, etc, plus co-infections can run more than $400), but I think it's worth it to have the best Lyme lab in the country run your blood test.

Hopefully your insurance will reimburse you for part of the cost!

Note to moderators: I do not have any connection to IGeneX labs, I just think they're the best. So do most LLMDs in the country.

Good luck! Please keep us posted!!
((((hugs))))
JoAnn
Posted 11/29/2010 5:50 PM (GMT 0)
Did you just have a brain MRI done, or spinal cord too? Not all with lyme will have anything show up in the brain, but they may have findings in the spinal cord.

In fact, one MS radiology site says that if there are areas of increased signal in the spinal cord but not the brain, that lyme should be considered as a possibility.
Posted 11/29/2010 6:53 PM (GMT 0)
Hi Tinkity,
I am really sorry to hear you are feeling this way, although, like JoAnn, I can relate!
Actually, I think a lot of us here can relate!

As for me, I have what I call 'pain cycles'. Every 3 or 4 months I get into an incredible
amount of pain - from the waist down only. The pain gets so bad that standing for more
than 10 -15 minutes is impossible. As you can imagine - it cuts into fixing meals around
here, poor hubby devil

Anyway, this pain just barely responds to opioids, so I can't do much of anything that
requires me to be on my feet for more than 10 or 15 minutes. Even sitting on a chair
or something where my legs 'hang' I can't take for more than about 30 minutes.

Please, please don't put too much importance on any blood test!! I was on abx for a
full 12 months before I tested positive. I knew that I had tick-borne infections,
as I had all the symptoms - except testicular pain - fortunately!!! smhair -I'm female!! smilewinkgrin

Many other symptoms will 'cycle' on a fairly regular basis with tick-borne infections.
It will coincide with the different cycles that the bacteria/organism goes through while
in our bodies - spirochete, L-form & cystic form.

In order to keep this from becoming a novella, I should stop here - but please continue
to ask questions and read more - you are now your own health advocate!! You are the
only one who will see to it that they receive the medical care they need.

Hope this helps some...
Trav
Posted 11/30/2010 1:19 AM (GMT 0)
Hello, and thank you! Actually, I have many Lupus/Fibro symptoms as well... it never totally goes away, but the more severe things subside. For instance, I am in a sort of 'remission' state right now, so I can walk. In one of my episodes, I litterally could not walk. The pain, unsteadiness, weakness, and neurological symptoms were too severe. I always have pain. I always have some symptoms. But I have gotten to where I am happy and grateful when I can function!!! lol

I had an MRI of my spine a little over a year ago and it was clear. I really cannot in any way afford to pay for that test on my own, but one wonderful thing is that I saw my regular medical person today and she is going to work with me to find the best Reume/LLMD that I can, that my insurance will cover, that is not terribly far from me. She is wonderful and I am looking forward to it. I will be able to seriously look into and find out if it is autoimmune or Lyme. :) I'm so tired of not knowing, yk?

It's nice to know people can relate, even if I'm not sure we share the same disease. :)

Posted 11/30/2010 2:49 AM (GMT 0)
My spine MRI went from being pretty much ok, to being a complete mess in 1 year's time, so I wouldn't put much weight on an old MRI.

Not sure it would change the way you're being treated or not, but it could give you some new info to get a new one.
Posted 11/30/2010 4:51 PM (GMT 0)
Thanks, I'll look into that. It hasn't been exactly easy to get the testing I need or want, so that may take time. I think things are moving forward for me though. I did find out yesterday that I am severly vitamin D deficient. Not sure how that's related to what is going on with me, but I'm looking into it and gonna take some much needed vitamin D now.  ;)
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